I was prescribed chloroquine for 23 years and as ... - LUPUS UK
I was prescribed chloroquine for 23 years and as a result am now sight impaired, has anybody else got experience or know of someone who has.
I met a chap at St.T's who had been on the stuff for a long time and had some pretty horrid side effect. He confided in me that his skin ( which was dark ) was patchy and miscoloured. He said his hair had come out in patches to match the skin problems and that his sight was not good at all.
I politely said that he looked ok, and he said in very hushed and almost shamed way that he was wearing make-up.
He then removed his hat.
I could have wept for the poor man.
I have been on Hydroxychloroquine for over a decade and it has given me my hands and my life back. I understand from Prof Hunt that levels are controlled far better than in the past and this sort of issue is very rare. But to watch out for any shift in my colour balance or vision.l
hi, many thanks Thaddeus but I have to point out that hydroxychloroquine is quite different from chloroquine, chloroquine is very toxic and by all accounts rarely if ever used in this country which has me scratching my head as since I was 23 year old that is all I had given to me until a couple of years ago after extensive sight tests over a long period of time revealed I have little sight left as a consequence they stopped chloroquine immediately and my consultant of 22 years seems to have gone awol where I am concerned, without any consultation I have been put on another consultants list and been told that my original consultant has retired yet every time I go to clinic he is there large as life but it seems not for me. frustration is a very mild word when it comes to describing how I feel, so thank you for taking time to liaise with me, I only joined 10 minutes ago and you are there for me, mega thanks, it is the most interaction I have had from anybody in the last 2 years or so, it means a lot.
Have you considered writing to your MP. They may be a bunch of self serving gits, but they do carry some clout in this sort of thing. A letter asking for a clarification or explanation would go a long way.
This forum is a great resource i wish it been around when I first got ill.
Doesn't one compound turn into the other in the body?
Hi Maalidog I have been on Hydroxchloroquine for over 11 years now and my eyes sight have gotten really bad.I am really worried about it and I shall be speaking to my Rheumy.The only good thing is the eyes are healthy. My eyes are so bad that I dont pay for my eye test any more.
Maalidog - this sounds like medical malpractice to me. I would get online and search the complaints procedure for your particular local HA - and write as detailed a letter as you can. Don't be fobbed off.
hi, many thanks for this, my husband has been saying the same for a few years now, I too feel I have a case but as we all know little fish like ourselves never win a victory over the big guns, especiallyu as I live in Doncaster and at the moment there is more malpractice things happening at Doncaster royal infirmary (dri), every week for the last few months DRI is constantly in the headlines and scores of staff have and are leaving to take other jobs, as it happens my husband had his first knee replacement in January and subsequently is suffering a blood clot (DVT) and on the day we were up there seeing about it there was another 5 people of all cvategories there for the same, disgusting, when he went for a scan someone made a comment that they were over run with scan patients all for the same complaint. so I really cannot see myself securing anything concrete or compensatory from this, no one will commit to admission especially on record that chloroquine and consultant are responsible for my sight loss and eye damage, one of the doctors I see said verbally a few weeks ago (and quite angrily I may add) that when asked why my sighjt loss I have to tell them it is because of the medication, all well and done, but iot wasn't in front of a witness or on paper.
I think yoyur advice is good, but the luck I have in my life I really cannot see me beating this shabby consultant and nhs.
Does that mean you won't even try? You can get half an hour free with a solicitor. If it was me I would google for a specialist in medical malpractice in your area and go and get your free advice. With luck someone will take you on on a no win no fee basis. You have nothing to lose (more than what you have already lost). The thought of something happening to my eyesight terrifies me. Good Luck.
thanx Maggie, you have got me thinking, seriousy about this. I very much appreciate you, thank you. p.s to Maggie and everyone else, although I am quite astute with my grammar and spelling my eyesight makes my texting look very bad with a million mistakes, please bear wuth me and I apologise for this and any future nightmares I may send you all to read.
Hi maalidog
Now really worried by account of what you have been experiencing. I was on hydroxychloroquine for about 8 years then started to suffer hair loss so was put on prednisolone for a short while along with chloroquine. I have been on chloroquine for about 2 years. I have not had great eye sight since I was a child but have recently noticed that my sight has been getting worse. My rhemy has said that there are not any better options for me as in his option what I am on is the best thing for me to have. I have also developed in his words a very unusual skin complaint which he has only seen in 2 other lupus patients. I'm not going to see rhemy until January so don't know what to do now??
many thanks to you all for this great heads up: i knew about hydroxy & eyes (am being checked regularly at nhs hosp eye clinic) but i'd not run into chloroquine and am very glad to be aware about it
Our local NHS hospital does not have an eye clinic as far as I'm aware. I've been going to local opticians for eye tests, because I'm taking hydroxychroroquine. I'm absolutely fed up to the back teeth with them trying to flog me new glasses every time I go.
I've been on hydroxychloriquine for about fifteen years and it is the only thing that has ever helped my lupus.
I always had very poor sight which deteriorated and now have dry macular degeneration and cataracts. My ophthalmologist and ricin have always monitored me and I basically decided I would put up with poor or little sight to be spared some of the other problems.
Having said which I don't really think in my case it was the drug. Just think I had lousy luck with my genes!
Why is it that some consultants are more aware than others?
I saw a different consultant last week, and the first thing she asked was were my eyes any different? As it happens I've got substantial optical nerve damage in both eyes which the optometrist has said isn't due to the pressure, which is high, but she has still written to him to check it's not the hydroxychloroquine.... my previous one just said I bet your eye man isn't impressed with the hydoxyc. I'd already checked with the optometrist, and he's said the damage is so bad it won't make any difference!!
Just another inconsistency in the crazy mixed up world of lupus!!!!
